Need more advice please !

[Danni54]

I am absolutely desperate! I saw my Dr. yesterday and he had the results of an Xray I had 2 weeks ago which had been sent to India and it contradicts my DEXA Scan which showed 2 wedge fracture's and splinters of bone digging into nerves. Also a previous Xray which was sent to Australia because our hospital doesn't have enough Radiographer's and that one showed cancer. Having had lung cancer , that was a worry and my Dr. said that he would be with me till the end but rang back 5 days later and said that our hospital had reviewed the Xray and they said that it's Osteoporosis! The Xray I had 2 weeks ago apparently showed 1 wedge fracture. The pain is getting worse and worse and I'm in absolute agony and my back feels as though it's on fire and the electrical tremors make my leg's go. This is no life. The Dr. is going to find out exactly how long it will take for the MRI....he thinks that the waiting time is 18 month's and he is going to speak to a Neurologist but this all takes time. He thinks that the stuff in between the vertebrae may have ballooned out and the wedge is compressing it and nerves . I really need to know why my spine pain is getting so much worse but I REALLY don't understand why I keep getting a different story all the time. I need to know what's going on because then I can cope but this is torture and my RLS is breaking through the Buprenorphine! My Dr. doesn't have much faith in the Spine Team at our hospital which is really depressing! I get so tired taking Oramorph and Buprenorphine and mentally, it's getting me down. So sorry to moan on. I know that a lot of people here have multiple fracture's but I wondered whether anybody had any advice for me. Thank you for ' listening ' ! Take care all. Danni

[fraid]

You poor thing! What a ridiculous scenario sending xrays to India and Australia, surely they can be read where you had them taken? Can you afford to pay for MRI privately? If not you could try the book and choose thing if they still do that, whereby if your hospital can't deal you can go somewhere else privately but nhs pay, a lot quicker.

Have you tried, for now, ice / hot pax, ibuleve, nurofen to calm the inflammation, a gentle massage to relieve muscle spasms, can you up your RLS meds? You really need to talk to an expert, maybe someone from this site. Good luck, I feel for you, a life in agony is no fun atall. 🫤

[Danni54 in reply to fraid]

Hi. Thank you for replying and for the advice. Our hospital is not fit for purpose! There are 453 beds but thousands of people have moved here so they just can't cope. I live in Scotland. The amount of houses being built is crazy and while I feel really sorry for the Nurses because they are wonderful but a lot of Consultant's, Radiographer's, etc. won't work at our hospital because it has a bad reputation and that's from the Nurses and people who work there! I have met a couple of good Consultant's, 1 being the Thoracic Consultant who refound my lung tumour after the Pain Clinic omitted to tell anybody about it for 15 months! I had a terrible night last night despite the Buprenorphine so I had to take another one at 4.20 a.m and I'm feeling pretty awful. My leg's were kicking like mad again! I have a problem with my speech since the lung cancer so I hate speaking on the phone but I think that I will phone the ROS Nurses. I'm absolutely desperate and thing's are getting much worse more quickly. I did tell the Dr. that , although I hate jumping the queue, I would like to see a Neurologist or someone from the Spine Team privately so if I haven't heard back from him by Monday I'm going to phone and chase it up. My Dr.s have also been really lax when it comes to helping me.

I hope that you aren't in too much pain. People on these Forums are amazing and so brave but kind and helpful and I appreciate your support so much so thank you again. Take care.

[Jumpey]

I'm so sorry you are suffering. Can you afford a private appointment with a consultant ?I pray you are out of pain soon. You could ring the ROS helpline for advice.

[Danni54 in reply to Jumpey]

Hi. Thank you for replying and for the advice. I have asked my Dr. about getting a private appointment to speak to a Consultant and I will chase him up about doing that but it's, also, a good idea to phone the ROS Nurses. I have brain fog just now because of the pain....that's my excuse! I didn't sleep much last night, took an extra Buprenorphine which is making me feel queasy !I hope you are coping and I hope you aren't in too much pain. Am off to try to sleep a bit ! Thank you again. Take care.

All the best.

[Megams]

~I am so sorry to read of your plight and even though I can not offer any suggestions apart from what others have said, I am offering you special comforting thoughts in the hope that an appointment will be sent your way as soon as possible.

Blessings and healing hugs meantime.

[Danni54 in reply to Megams]

Thank you SO much. It means so much to know that you are there supporting me when you are going through your own problems. When I went through the lung cancer fiasco and eventual Lobectomy, it was people's healing thoughts and prayers that helped to see me through and I am so lucky to be in remission from that and I'm sure that's why. I'm going to go and phone the ROS Nurses so , hopefully, they will be able to advise me as well. I can't think straight with the pain! Thank you again . Sending big hugs to you and please take care.

[Sleeplessinlife]

Oh I have every sympathy for you. I too live in scotland, and I remember also being told scan results were going g to India to be assessed due to shortages of radiographers. ! I have been through quite a journey with my spinal fractures also. I found no anti inflammatories helped my pain much, my gp just kept changing the type! Omeprazole to cover the potential side effects...gave me constipation...the only drug that gives me any relief is amytryptyline, I take it at night for nerve pain. Quite frankly it knocks me out and I get a decent sleep , pain relief, until around 8am. I've had all the usual general pain killers during day, from oramorph downwards on the analgesic scale, ...they haven't helped. Constipation gave more pain than spinal fractures. Half the time the gp/hospital/nurses don't believe you when you explain side effects. It's 7 months since my fractures, I'm now working on paracetamol, and amytryptyline at night. I walk in morning, lie down when I get in for minimum 30 mins, then I can get up and function upright again. This is working forme. I feel I'm finding my own way 'despite ' the medical input. Hot water bottles sometimes help. My gp practice and local hospital refused to x Ray me for months...not necessary they said...chronic muscle pain. Eventually a trainee gp sent me for xray and my 7 fractures diagnosed..

[Danni54]

Hi . Your ' name ' is so appropriate! Thank you for your reply but I'm so sorry to hear about what you are going through. Too many of us are suffering with not a lot of understanding or support from our medic's! Have you tried Lansoprazole instead of Omeprazole? I changed to Lansoprazole about 4 years ago although I have to take 2 a day but I have what they say is a " massive hiatus hernia " at 10 cms. Don't get me started on the Gastroenterology Department here....they are horrendous! I also , occasionally, take a spoonful of Gaviscon Advance. In fact your medical path is a lot like mine except that you have 7 fracture's which is awful and why do the medical profession assume that we don't know our bodies? I have a big, hard lump at the base of my spine and I told my Dr. and it took 7 month's of begging for an Xray before he gave in and I had the DEXA Scan which showed 2 wedge fracture's, splinters of bone digging into nerves and Osteoporosis in the Pelvic bones, hips and elsewhere. No help, support, advice or medication since despite contacting the G.P. 's and the Pain Clinic eventually allowed me to have Buprenorphine for my leg's and that was a battle and I had to growl! They help with the fracture pain but like you with the Amytryptilline , the Opioid's make me really tired and sometimes I have to take Oramorph which doesn't do much! To be told now that I have 1 fracture is incredibly confusing because I have now had 4 different diagnoses! Which do I believe and why is the pain SO much worse and is that what's causing my leg's to be numb and sore and cold etc.? So many questions and I don't know who to trust! Do you have Restless Leg Syndrome because of your fracture's? Mine is getting worse which is why I have asked for an MRI. I do make myself get up and do housework and did do a bit of gardening but I can't do that now. Previously, I loved gardening, walked our dog's for miles and loved that and the dog's SO much. Now, we can't have a dog and I used to paint but can't do that. I am trying to lie down for ½ an hour now and then but I lie there and think about what I want to do! Grrrr ! So frustrating! Hot water bottles are great, I agree! Please get in touch if you need to offload because much as you and others are there for me I'm here for you if you need to offload. I do understand what you have been and are going through. If I hear back from my ' new ' Dr. with any useful information I will let you know. Please take care. Very best wishes x

[Southerngirl2787]

Oh bless your heart! I am so sorry you are suffering this pain! 18 months for an MRI??? I've had 10 spinal fractures and they are the worst pain I've ever experienced. I also have 4 fusions done, 6 discs bone on bone, trying to get strong enough for that surgery...but the fracture pain is by far, the worse! Do you have a brace to wear? It can make a huge difference to give you a break from muscular pain involved with this stuff! Cold packs can help a lot too...I prefer heat to relax in the evening. Your docs may tell you these will heal...but it's very slow, and some of us don't heal due to edema on the spine. I have autoimmune conditions, AS and Lupus and every single fracture has had lots of edema around it...neurosurgeon had to do kyphoplasty on all of them over 2 years due to the fluids/edema refusing to clear up. Edema on the spine causes additional pain, and is seen from an MRI. I still can't believe it will take 18 months to get one. I also use hiking poles for walking, they help immensely to keep me upright and stay strong while these things heal. It's very hot right now, but nothing makes me feel better than getting out in the morning, it's usually 90 by 9am...I live along the Texas Gulf Coast...but moving and heat work well together. Afterwards I'll lie down and stretch out my spine, that helps as well.

[Danni54 in reply to Southerngirl2787]

10 fracture's is mind blowing to me and I'm complaining about 2. Having been told by Australian Radiographer's that the fracture's were cancer and then our Radiographer's saying no it's Osteoporosis I, occasionally, have a niggle at the back of my mind that that's what's going on having gone through lung cancer. I am so sorry that you are coping 310 fracture's and I think that you are amazing! I am really grateful to you for writing with advice. I asked my Dr. when this first started whether a support belt would help and he told me not to wear one because it would weaken the muscles. He hasn't helped me at all. I first noticed the hard lump 3 years ago and had to beg for the DEXA. He has never explained why the pain has been getting so much worse till it's now unbearable. I did see a different Dr. last Wednesday and he did say that he's sure that the fluid and nerves have ballooned out from between the wedges . I'm going to phone the Surgery on Monday to find out whether this new Dr. has managed to contact the Neurosurgeon and find out about the MRI. I haven't been told anything about Osteoporosis by our medic's, no medication and have had to fight for everything including my lung cancer misdiagnosis! I'm now so tired of it all and I shouldn't have to fight for treatment when I have genuine problems. I had Endometriosis years ago and had 3 major operation's and even then 1 Dr. made out that I was imagining the pain when I had a blood cyst the size of an orange on my left ovary. Do your fracture's and the edema affect your leg's so that your balance is bad , they're cold but numb , painful with a feeling of needles? Then at night they kick. I know my Ferritin level is 39 so I have to take Iron every other day and the RLS Forum people have told me that I need to keep my Iron level up. The Dr.s don't check it except when I ask for a blood test. They just don't seem to care.

I feel so bad that I keep ranting and moaning when you and others are so much worse. This post is too long !! I wish that I could wave a magic wand for you all. I don't have anybody here who understands or who will help me and give me advice so I am beginning to feel overwhelmed and a bit scared because I am getting weaker. So sorry to moan on and thank you for taking the time with me. It means so much. Please take care...no more fracture's please! I know that I have Osteoporosis in my Pelvic bones and elsewhere but must admit that I don't take any particular notice of that and tend to ignore that !

I hope you manage to sleep! It's been warm here but not as hot as with you. I have a friend who married and moved here from Florida and she can't get used to temperatures of 24° ! Too cold for her but perfect for us! I have been to California and really enjoyed it though it did get hot! You have so much to cope with so please know that you have a Scottish friend who thinks that you are amazing and I'm here for you also. Thank you again. All the best. xx

[Southerngirl2787 in reply to Danni54]

I can't believe what they have put you through! It's shameful! I have never heard of cancer of the vertebrae, someone made up that to put you off. The edema in the spine can affect the nerves, and yes, throw off balance, my legs are sore and numb a lot...I just had the nerve impingement release surgery, made a huge difference. The pins & needles feeling is nerve pain. Complex bioactive Vit Bs are needed, and a supplement called ALA. They won't perform miracles, but they will help the nerve pain. But it's one more surgery of the 15 in 2 years. After all my fractures it has moved my spine as well, it's now sway back, a condition called Lordosis, which is another pain to deal with. Missing a cyst the size of an orange is obscene! Some of the treatments for OP are not good for us, especially when you have fractures. My neurosurgeon said never to take the Bisphosphonates, they actually prevent fusing and healing....he got me started on Tymlos, said it and Forteo are the only safe ones post spine problems. A good supplement for OP is Strontium Citrate, I take low dose, one a day in addition to the Tymlos daily injections. Tymlos is only 2 years, and my bones are looking better, but long term, the Strontium Citrate will keep it going naturally. Be careful taking calcium...it can be dangerous if you take one that is not organic...and you need K2, D3, boron with it. A good multi is True Osteo. I don't take calcium, as the Tymlos runs up the blood calcium, so I'm monitored through blood testing, and so far my levels are good. I eat calcium rich foods, so that's safe. I also take a supplement called Lactoferin, it's got clinical evidence of helping bone health. Look up Dr Doug Lucus, great website and information. Most of all, don't let stress consume you...that runs up your cortisol, and that messes up healing! Not easy to do with high levels of pain, I totally understand. I have to calm myself, lie down and get in a position to quiet the pain....knowing when I get up the pain surges back, but I feel a bit stronger. The brace or belt will cause lower muscle density in the abdominal area if you wear it all the time...all true. But sometimes when you need to get things done, you need extra support. I don't think our doctors understand how painful this can be. We are all here for you, you are not alone!

[Danni54 in reply to Southerngirl2787]

Thank you again! 😊 I don't know whether you realise how amazing you are . Sorry about the typo error! Those of you who have so many fracture's are wonderful the way that you help and advise other people. I'm SO grateful. I've had 2 really bad day's....worse than usual but if I knew for sure what was going on I would cope better. I was so calm when I was told about my lung cancer until I found out about the negligence but I still just got on and coped with it and the Lobectomy and was determined it wasn't going to ' get ' me but this....!I will get a back brace and see whether that helps and will look up Dr. Lucas. I have been looking up different sites and the best ones apart from ROS , are the American sites but I've learned more here than from any medic or site ! Thank you so much for the advice about calcium etc. I knew that medication like Lansoprazole wasn't good for Osteoporosis so will try alternatives. My appetite isn't good. Having a 10 cm hernia doesn't help! I haven't had any medical help with that either. In fact it seems that where I live, we are just left to cope with pain and illness! It's so sad because the medical profession and our hospital had such a good reputation year's ago but not any more. I know of other's who are going through hell with different conditions including cancer! Scotland used to be one of the best places to be in many ways.....the people are wonderful though!!

You must dread having yet another operation! I hate that feeling of drifting off when they give you the Anaesthetic! Better than being awake though !! I didn't even know there was a nerve impingement release operation and the edema explains a lot !

My Dr. looks to heaven when I tell him that I have been Googling etc. and I know that it drives the Dr.s mad but if they did it themselves they might learn more ! I and many other's feel as though the medical profession don't care any more . Since Covid they seem to do less with Nurses doing a lot more but the medic's attitudes seem to have changed and I'm not taking away from the amazing work that was done by them during Covid but there are other horrible diseases and illnesses apart from that !

Am off to try to sleep if my leg's will let me ! Please take care and I am , truly grateful for your help and support. You really are incredibly brave and kind. Thank you and definitely no more fracture's please!! You have enough to cope with. I must admit that I try not to think about the other areas where I have Osteoporosis and Osteoarthritis! Are you very wary about lifting and bending? I do it without thinking and then regret it....or get stuck! Please keep in touch and let me know how you get on. Big, gentle hugs and I'm thinking of you. xx🧚‍♀️💖

[Southerngirl2787 in reply to Danni54]

On lifting...keep it under 10 lbs for a while. Pick up close to your body, hold it tight against you....never lift from above your head, or bend over and lift up. Squat down, either one leg or both, I go down on one knee, balance on the other leg to pick up anything. Keep a straight back in your mind, if you do stretches, exercises, do not do flexion, forward extensions ever again. One of the best exercises is to simply back up against the wall, feet to the bottom, tush to the wall, then as much of your back all the way up to your head against the wall. Hold 30 seconds. Repeat throughout the day. It's hard at first, but it really gets the spine stronger faster than anything else. Pushing the head back can be really hard, you may be looking up and the ceiling at first, keep working at it. Walking is great too, movement will keep you strong.

[Sunseaandsand]

Hi Danni54,

I am so 😔 sorry to hear that you are no closer to finding anything out.

I do understand totally how frustrating it is when knowing you need help but not getting it.

My GP is as frustrated as I am because since the surgery re opened after New Year’s Day he has tried endlessly to get help for me.

I have been either been turned down from having an appointment or shown the door as soon as going through it.

No one wants to help in any way.

Osteoporosis is so poorly understood and under recognised and having now had 15 fractures in the spine and at least one in the rib I like you am desperate to be heard and helped.

I was turned down to be seen by the neurologist saying he could not help me ( my dr wrote twice and both times the same answer) I even phoned the secretary to ask if he would see me privately and was told I would be wasting my money because he would only give me the same answer.

You do mention that the Thoracic Consultant was very good and found your tumour that others had missed

Would it be possible to get a further appointment with him or to be honest go privately for your initial consultation because he would then be able to get an MRI done quickly.

It does sound like you really need peace of mind because when we go through such negligence it is only natural to lose faith then added to that everybody telling us something different no wonder we go crazy with worry.

Everyone is here to support each other and to be able to share our experiences is a great blessing.

Take care and I do hope this week brings some positive news for you. 🙏💕

[Danni54]

Thank you for that. It really helps, mentally, to have your support and understanding. You would think that Consultant's would like a challenge and I, mistakenly, assumed that the medical profession was there to help us. How wrong am I?! I'm glad that your GP wants to help you but I, honestly, can't understand the attitude of your Consultant's....or mine ! You have gone through and are going through a terrible time and I sympathise so much but you need somebody to listen as do we all. I have been in bed for the majority of 2 day's and I hate it! Drugged up with Opioid's but still in pain....it's no life. If I don't hear something positive in the next couple of day's then I'm going to summon the little energy I have left and go to our MP and the head of our hospital and try to get something done about getting more of an understanding for Osteoporosis sufferers. There must be a Consultant somewhere in Britain who cares and wants to help us. I know that ROS are wonderful with their Nurses , Helpline and information but we need Consultant's and Dr.s o listen!

I have had multiple thing's wrong for most of my life and having 3 major ops ending in hysterectomy aged 34 because of severe Endometriosis( which I know didn't help with the Osteoporosis)but I fought through everything including the lung cancer but now.....I feel like a pathetic lump! Not that I sit around doing nothing but ½ an hour of being up and my back is in agony and my leg's feel weird all the time though the Buprenorphine helps some of the time. I fought GM Crops, felling of forests ( and won !! ), organised Endometriosis meetings with a wonderful Glasgow Gynaecologist while looking after parent's, walking dog's and so much more but now....!

Why do these Consultant's want to make us feel as though we are being a nuisance or that we are imagining thing's? Grrrrr!

I have mentioned to my new GP that I want to see the Neurologist privately and I'm thinking of writing a ( short !!) letter to my GP because I always forget to tell him everything! My husband is in awe of the medical profession and was pretty shocked one time when I lost my temper with a useless Gastroenterologist!! I don't lose my temper very often but I won't be spoken to as though I'm stupid! 😕

Better stop ranting! Thank you so much for being there for me . It means so much. Please remember that I'm here for you too ! I don't know how you cope with 15 fracture's and your rib . Are you able to see a different Consultant? I will let you know how I get on and if there is anything that I am told that could help you. If I get a good Consultant then , maybe, I could Private Message you and let you know? Something has to be done so that we get help and support from the medical profession. I hope you manage to sleep! I hope we all do ! Big but gentle hugs to everybody.

Think I will call you Sunny ?! Thanks again and big hugs.💜🧚‍♀️🐕‍🦺🐿🐈 xx

[Tlflom]

Oh my, this is terrible in so many ways it is wrong. We often send radiology exams to Night Hawk in AU. They are very good. I know nothing about the Rads in India.

You definately need another opinion with a different team. I am reeling in shock at 18 mo wait for an MRI! Docs here can get patients in same or next day. Can you get faster care by going to an emergency dept?

This is one of the reasons I do not come to this website. It is depressing to hear about rationed socialized medicine. Many in the USA want it but do not understand it means rationed Healthcare.

I am so very sorry you are going through this.

[Danni54 in reply to Tlflom]

Hi. Thank you for the sympathy and support. It was the Australia Radiographer's who first found my lung tumour but our Pain Clinic who ignored it ! That's why I trust them more than anybody else so, when I was told that the fracture's showed bone cancer I absolutely believed them. Then our lot contradicted Australia. After the lung cancer fiasco who would you believe? I have that niggle and have been told 4 different thing's so my head is reeling! I was going to phone my new Dr. today but I'm in such pain that I don't want to speak to anybody! Poor husband! As for going to the emergency department, the waiting time to be seen is approximately 6 hours. A few week's ago I was admitted with a suspected heart attack after seeing a Dr. in our Surgery. I sat in the waiting room for an hour and then the Paramedic's rang and said that they wouldn't get to me for 4 hours! I didn't think I was having a heart attack but had a lot of pain and was sweating. Our hospital is 25 minutes from our Surgery! I had to phone my husband to come and pick me up to take me through! As it turned out, the Admitting Consultant decided that it was all to do with my 10cm hernia! Good job I wasn't having a heart attack!

What is happening with the NHS is so frightening for us all because it's broken . The Government think that we don't realise that they are pushing us towards private treatment but if we don't have the money then who is going to suffer ? Not the Politicians! The Nursing staff are suffering as well.

Am off to take another Opioid which I hate ! Please take care and thank you again.

All the very best. xx

[Tlflom in reply to Danni54]

You are most welcome 🥰. I hate opiods too. Something effective for me is substituting a tylenol + ibuprofen. It hits a lot of pain receptors without the down sides. In my opinion, bone cancer is the most painful, be kind to yourself.

Look at the Low FODMAP diet. It will cut down on indigestion. Onion, garlic, sugar are the biggies. If the hernia is the hiatal, then smaller meals and staying upright for a while after eating. My hubby has actually shrunk his hernia.

I am sending positive thoughts your way. 💝

[Danni54 in reply to Tlflom]

Hi. Would you mind if I call you Flo ? Cheeky but thank you so much for getting back to me. Unfortunately, I can't take Ibuprofen as they really hurt . I'm really pleased that your husband has managed to shrink his hernia....I didn't even know that that could happen! 😳 I did try the FODMAP diet but then had cancer and that put my whole system haywire! I find being kind to myself difficult which drives my friend's mad ! My husband is in denial about how bad I am which makes life a bit difficult and again, drives our friend's mad ! That's another story! I am going to speak to my Dr. tomorrow about seeing a Neurologist but I am SO tired of fighting for treatment which I have been doing pre lung cancer 6 years ago. Our hospital doesn't have a good reputation and it seems to be getting worse. The Nurses are amazing though. I have to drag myself out of this depression though.

I hope you aren't in too much pain. Please take care.

Very best wishes and hugs

[ROSModerator Partner]

Hi all,

It’s so great to see such kind support. Coping with pain can be so exhausting and lonely, so thank you for coming on and sharing your experiences with each other. We hope this community provides a space for you to feel heard and understood. We just wanted to drop by to let everyone know that we have lots of information on our website that might be helpful theros.org.uk/information-a...

As others have mentioned, we also would really like to highlight our helpline where our friendly nurses can offer their specialist knowledge, for more information see: theros.org.uk/information-a...

Wishing you all the very best,

ROS Moderator